Date Presented 04/13/21
Researchers examined caregiver experiences surrounding the transition out of the educational system for children with cognitive disabilities. Researchers analyzed 66 survey responses to the UW Caregiver Stress Scale and open-ended questions. Results suggest caregiver stress is constant throughout the transition, and perceived supports are strongly lacking. Meaningful occupational engagement outside the school structure was an overwhelming concern, substantiating a critical role for intervention.
Primary Author and Speaker: Elizabeth Brooke Preble
Contributing Authors: Diane Long, Tina Caswell
PURPOSE: The transition out of the educational system for a child with disabilities is a critical time, as the child’s life drastically changes. This change puts increased stress or burden on caregivers and changes the caregiver experience. Understanding how this transition impacts the caregiver, and how the caregiver perceives the transition is crucial to understanding how to best support the family unit during this time. Therefore, the purpose of this study is to examine caregivers’ experiences surrounding the transition out of the educational system for caregivers of children with cognitive disabilities. The research questions are: 1) What is the level and experience of caregiver’s stress when their child with cognitive disabilities transitions out of the educational system?, and 2) What are caregivers’ experiences and concerns surrounding their child’s transition out of the educational system?
DESIGN: Researchers used a quantitative descriptive survey design. Researchers recruited participants using convenience sampling via social media platforms and professional contacts. Inclusion criteria were primary caregivers of a child: a) ages 16-27 years of age; b) who had an identified cognitive disability; c) who were able to understand the English language for survey completion. There were no exclusion criteria.
METHOD: Researchers collected data via an online survey with 66 caregiver respondents. The online survey included participant demographics, the University of Washington Caregiver Stress Scale (UW-CSS), and open-ended caregiver experience questions. Researchers analyzed UW-CSS ordinal data using descriptive statistical analyses including frequencies and mean T-scores. Two researchers independently reviewed open-ended item data, then through consensus aggregated response themes.
RESULTS: Fifty-six percent of participants experienced significantly elevated stress as measured by the UW-CSS. The average T-score of caregivers whose child already transitioned was 60.56, while those who had not transitioned was 59.64. Categories of main concerns of those who had not transitioned were finances (85%), access to programs (75%), and safety of the child (65%). After transitioning, the main concerns were access to programs (77%), child’s employment (55.6%), and safety of the child (52.8%). Fifty-five percent of caregivers expressed a perceived lack of supports during the transition. Caregivers expressed concern about the lack of meaningful occupations that existed outside of school, including how the child will spend their days, loss of social connections, and job opportunities.
CONCLUSION: Findings suggest caregiver stress is significant and ever-present surrounding the transition out of the educational system for children with cognitive disabilities. Although the type of stress and focused concerns shift surrounding the child’s transition, caregivers consistently reported concerns about the lack of perceived supports they felt throughout the process, and lack of planning for, or development of meaningful occupations after their child transitions. Schools and community programs could implement supports to effectively prepare the family unit for life after the transition, focusing on the development of meaningful occupations outside of school.
IMPACT: Findings suggest practitioners could provide services that promote post-transition engagement in meaningful occupations, which in turn may reduce caregiver stress by supporting identified relevant needs. Practitioners can use this knowledge to inform transitional support recommendations.
References
Barros, A. L. O., Barros, A. O., Barros, G. L. de M., & Santos, M. T. B. R. (2017). Burden of caregivers of children and adolescents with Down Syndrome. Ciência & Saúde Coletiva, (11), 3625-3634. https://doi.org/10.1590/1413-812320172211.31102016
Dagmar, A., Jensen, M. P., Salem, R., Liljenquist, K. S., Bamer, A, M. (2018). University of Washington Caregiver Stress Scale. University of Washington, 1-15. Retrieved from https://uwcorr.washington.edu/wp-content/uploads/2018/12/uw-css-userguide.pdf
